Who here actually has HYPERthyroidism?

LilyOfTheValley008
LilyOfTheValley008 Posts: 95 Member
edited November 7 in Social Groups
So I've recently just been diagnosed with hyperthyroidism in its early stages apparently. I'm still waiting for the results from a second blood-test (my GP is on leave at the moment) but just wondering what the experiences of others is.
I've had problems with anxiety, fatigue and dizziness but don't even know if I can attribute to this or not. (The reason I got the blood test to check in the first place was because I fainted while driving in my car randomly :S)
Anyway I was just wondering if anyone here has any experience to share mostly!

Replies

  • Fuzzipeg
    Fuzzipeg Posts: 2,301 Member
    I am not hyper there are many on this list who are though, I am sure when they come on line they will say they have similar issues. Probably under-activity is the most common problem. I hope you get your second results soon and you manage to get on top of your personal situation, so many possible symptoms put together in ones own bodies "special way" . All the very best
  • I was diagnosed with hyper T in 2004. I was put on both anti-thyroid meds, at different times, and was allergic to both. I was treated with a beta blocker (Inderal) for many years. I finally had to get my thyroid ablated with RAI and now I am hypo. Hopefully, your hyper can be treated with medication. Are you having heart palpatations? HBP? Fainting can be a result of high or low blood pressure.
  • Yeah I was told my thyroid will likely turn the other way and become hypo I'm just hoping it won't be until I'm much older (I'm 19 now).
    My blood pressure is fine but I have a very fast heart beat, and have experienced palpitations . I'm going this Thursday to my GP so I'll add a little more info. But hopefully they can just "watch" things for a while instead of going on medication.
    I'm really glad there's so much info from others on this site though !
  • If they put you on Inderall your heart palps should stop or at least get better. Ask if you can take it at night time as it might help you sleep too! Don't ever rush into anything such as RAI without second opinions. That is my best advice. Find a good endocrinologist. ✌
  • Fuzzipeg
    Fuzzipeg Posts: 2,301 Member
    Please pardon my butting in, hypo here again. If I may say, having read comments from people on here who have been hyper and then treated surgically, I know this would not be an option I would follow without at least a second opinion and hours of reading and deliberation. I can only imagine the frustration, finding yourself with the same symptoms and still having troubles being medicated effectively.

    I know this is all far from a joking matter but I for one would like a factory reset button or DNA malfunction detector and rectifying setting.
  • shvits
    shvits Posts: 249 Member
    I have been hyper and hypo both! Lucky me. I tried the anti thyroid meds and my hair fell out and did not work too well. I thought about radio active iodine to kill my thyroid, but am allergic to iodine, and really didn't want to kill the whole thing. I opted for removal of 1/2 of my thyroid by a very, very skilled surgeon (worlds top surgeon is in San Francisco). You must go to an endocrinologist. GP's think they can handle thyroid and they can not! I have had lots of experience with people who did not know what they were doing trying to fix my thyroid problems. Also, not all endocrinologists are great either (oh, no!). So if you don't like the first one or two go to a third one. Good luck. This is fixable, it just take time and be patient.
  • Please pardon my butting in, hypo here again. If I may say, having read comments from people on here who have been hyper and then treated surgically, I know this would not be an option I would follow without at least a second opinion and hours of reading and deliberation. I can only imagine the frustration, finding yourself with the same symptoms and still having troubles being medicated effectively.

    I know this is all far from a joking matter but I for one would like a factory reset button or DNA malfunction detector and rectifying setting.


    I would love a reset button!
    It is very frustrating and exhausting having thyroid issues and the most frustrating thing for me have been the Drs who use only lab results for diagnoses! Errgh!
    I had RAI due to thyroid storm. I am actually lucky to be alive! ????
    The RAI did not totally kill off my thyroid. But it did drop my T4 drastically. After all is said and done I do feel healthier and happier now that I have some Levo and am not hyper any more.
    I can sympathize with hypers and hypos both! We have to learn to speak up for ourselves, and keep trying to find those elusive and experienced Drs.
  • AleshaRae82
    AleshaRae82 Posts: 31 Member
    I was diagnosed with Graves/Hyperthyroidism approx 5 years ago and I had no clue I had it. One morning I woke up and my eyes were hurting. It felt like there was these huge sacks of fluid behind my eyes and just touching them was painful. Not knowing what was happening I made an appointment to the eye doctor.

    He told me to see an Endocrinologist as this symptom was in fact thyroid related. Then everything started making sense. I was hot all the time and would sweat profusely, had trouble sleeping, bouts of irritability. I was put on PTU (Propylthiouracil) for 3 years and then was switched to Trapazole (Methimazole). The endo told me early on that both medications were "black boxed" and have some serious side effects - one being death.

    With that lingering in the back of my head he suggested two options - Radioactive Iodine Treatment or Surgery. I am fairly young and healthy and decided to take my risk with Surgery in Lou of the pill. I researched a lot during that time and felt more comfortable in the hands of a skilled surgeon.

    All went well. I had the surgery Dec 24th 2013 - The scar is fading but I'm not a vain person and don't mind it being there. Reminds me of how resilient the human body is. Finding the magic dose of Synthroid was a bit challenging since you have to have it in your body 4+ weeks before you can test your levels again. Its trial and error but my number one advice it to find an Endo Doctor you like that actually listens to you. I regret not making the switch sooner.

    Best of luck!
  • KimmieSue2011
    KimmieSue2011 Posts: 117 Member
    I'm hyper. I've got Graves disease. I was on methimizole for a year or two and am now in remission. As long as my levels stay okay, I'm not taking anything!
  • MeepleMuppet
    MeepleMuppet Posts: 226 Member
    Yup, those symptoms sound very familiar. I recently had medically induced hyperthyroid to test for cancer (I had my thyroid out due to cancer two years ago) and it was all of those things and more. I was MISERABLE. Hopefully your GP can help. Otherwise get a referral for an endocrinologist. It'll take some doing to get you back down to levels where you start feeling better, but it can happen. You'll find a ton of discussions on here about the various forms of medications, but it sounds like you're not there yet. Let us know what the doc says!
  • Good Luck!
    I was diagnosed with Graves Disease a few years ago (hyperthyroidism) had the radioactive pill its managed know for a while with synthroid. The symptoms that I had were racing heart, cold/hot temp/clamy /dry skin.etc
  • I was diagnosed with Graves/Hyperthyroidism approx 5 years ago and I had no clue I had it. One morning I woke up and my eyes were hurting. It felt like there was these huge sacks of fluid behind my eyes and just touching them was painful. Not knowing what was happening I made an appointment to the eye doctor.

    He told me to see an Endocrinologist as this symptom was in fact thyroid related. Then everything started making sense. I was hot all the time and would sweat profusely, had trouble sleeping, bouts of irritability. I was put on PTU (Propylthiouracil) for 3 years and then was switched to Trapazole (Methimazole). The endo told me early on that both medications were "black boxed" and have some serious side effects - one being death.

    With that lingering in the back of my head he suggested two options - Radioactive Iodine Treatment or Surgery. I am fairly young and healthy and decided to take my risk with Surgery in Lou of the pill. I researched a lot during that time and felt more comfortable in the hands of a skilled surgeon.

    All went well. I had the surgery Dec 24th 2013 - The scar is fading but I'm not a vain person and don't mind it being there. Reminds me of how resilient the human body is. Finding the magic dose of Synthroid was a bit challenging since you have to have it in your body 4+ weeks before you can test your levels again. Its trial and error but my number one advice it to find an Endo Doctor you like that actually listens to you. I regret not making the switch sooner.

    Best of luck!

    I second the find a good endocrinologist. I was hyper/Graves and took PTU/Methimazole for 15 years, diagnosed with it after passing out too. Finally found a good doctor after discovering I developed an allergy to the anti-thyroid medication and chose to go the surgery route this past June. It's been life changing, still working on getting the Synthroid dose dialed in but a good doctor makes a world of difference for thyroid problems. I suffered for years because of a lot of doctors still go by old standards or will only recommend the RAI route. Surgery is technology wise is more advanced, they can monitor the nerves little to no risk to vocals etc. now, but a lot of doctors still preach the scare tactic on it. Do you own research, get a good endo and life will be much easier to manage. The price you pay with a bad doctor who doesn't listen can be heart failure, liver damage etc. You know your body best, good endo's will adjust your meds or offer a course of treatment to help keep you as healthy and feeling as good as you can.
  • gamommy
    gamommy Posts: 131 Member
    I was diagnosed with Graves/Hyper in December of 2012 after complaining to my doctor about my profuse sweating and hands shaking. I also had difficulty sleeping, irritability, and some other symptoms. I actually thought, aside from the sweating, that I was hypothyroid...because I'm overweight. They did a simple blood test looking for markers I suppose and then sent me to have a thyroid uptake scan. It came back as me being hyperthyroid and after meeting with an endocrinologist, I was diagnosed with Graves Disease.

    They put me on Methimazole for almost 2 years which I think was too long. In January of this year all my Grave's markers were gone and I've gone into hypothyroidism. My endo decided not to put me on any sort of synthroid and wants to check later to see if things balance out. Right now it's a waiting game. I personally feel some of my symptoms from Grave's have returned...but I have to wait for my next appointment.
  • I was diagnosed with Graves' disease (hyperthyroid) in 2001. I was given propranalol to slow down my heart as I was a walking heart attack/stroke. Once I saw the endo, I had already had all the tests done. Basically they gave me no choice with regards to rai or surgery. I wanted surgery and they refused and basically forced me to pick rai (or death), so I did what they said. It was the biggest regret I have. I have never been the same and have been on long term disability ever since. I was 34 at the time, and was very active. Now I do nothing. If they corner/pressure you to do something, try your hardest to insist on what's best for you. Go to the medical library at your hospital and read up on your situation and numbers and use that info when you talk to the endo. Good luck.
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  • firststepformefal
    firststepformefal Posts: 180 Member
    I was diagnosed in 1991 with hyperthyroidism.

    I had gone to my doctor several times during 1990, seeing locums each time, saying I was not feeling well, there was something wrong: I could not sleep, I was irritable, restless, weak, hot, not feeling myself. The 2 different locums told me it was a virus and I would get over it. HAH!

    It was found by my ending up in emergency, with my heart pounding with an irregular heart beat, ON MY BIRTHDAY. I spent the night there. They had given me several drugs to try to normalize my heart. In the morning the surgeon came in and said that they were going to put me to sleep and give me a "Little jolt" to the heart to try to put it back normal. He walked 10 paces to the desk and looked at the monitor there and my heart was back to normal. He came back and said that I could go in an hour, but to visit my regular doctor as soon as possible.

    On Monday, I went to my doctor, who gave me a bunch of blood tests. They had be back 2 days later, because they could not believe my thyroid was that high. Maximum was supposed to be about 150. Mine was almost 500.

    They scheduled me to have the radiation test immediately and put me on a beta blocker to help my heart. It was decided I needed to have radioactive iodine to kill off part of my thyroid. I had to wait a couple of weeks, as there was a world wide shortage of the iodine. I was sick for 5 years after that, until I saw a homeopath. After 1 treatment with him, I felt better than I had since I developed the disease.
  • joflo723
    joflo723 Posts: 119 Member
    I have Graves (hyper-). I'm down to taking one pill (PTU) every other day because I had gone hypo- after taking two pills a day. Before that, I had the usual symptoms (sleeplessness, shaky hands, sweating, heat intolerance, heart palps), but before I was diagnosed, I had been having some other symptoms that it wasn't until recently I began thinking were probably also due to the Graves. 1) I didn't have bulging eyes, but I had occasional blind spots in my vision. 2) Whenever I would exercise, I my Eustachian tube in my ear would open (now I know this is called Patulous Eustachian tube). 3) I started getting vertigo and it was really bad a couple of times...couldn't even go to work because everything was spinning.
    I really think all this was related now. So if you have symptoms that make no sense...do some research and see if it can be tied to your thyroid. Amazing how much stuff in your body that thing affects!
  • LilyOfTheValley008
    LilyOfTheValley008 Posts: 95 Member
    Wow thanks for all the replies, I was wary of medication after doing my own research but some of these experiences are really awful!
    So to update, I went to the Endocrinologist who told me to have another blood-test and thyroid scan (I already had an ultrasound but it didn't tell you much apparently) and then went back after she had gotten the results. She told me that my levels had surprisingly gotten much much lower (still higher than normal but way better) and that she wasn't sure why. She told me there were two possibilities; I had simply gotten some sort of thyroid virus, or I did in fact have Grave's disease because with that my levels would fluctuate.
    She suggested putting me on a very low dosage of (can't actually remember what it was called...) this medication but I told her I would rather wait a month to see if my levels change or remain pretty good and she agreed.
    I'm extremely scared of my thyroid becoming underactive but I know I can't NOT be on medication if need be, it's just I'm only 19 and don't want to deal with that yet haha...
    I'll find out in November once and for all, but I'm praying it's only a virus.
  • 44scoobydoo
    44scoobydoo Posts: 34 Member
    I was initially diagnosed hyper and was losing a ton of weight, hair thinning and extremely irritable. They tried meds which I had a terrible side effect of pain in my legs. I then had the Radioactive Iodine Treatment and now I am hypo. BTW - I eventually started to gain a ton of weight even though I was hyper. So now I am on hypo meds and feel a lot better. I have only been on meds for a few weeks so I am hoping my hair thickness comes back. I am starting to lose weight so that's good. Hope this helps.
  • countrygirl336
    countrygirl336 Posts: 15 Member
    I have Graves Disease, so my levels fluctuate all the time, even after I had RAI 2 years ago. I can say, after RAI I felt MUCH MUCH better. I was on Synthroid for a little while after, but they took me off because my thyroid levels were back to normal. I get blood tests every 3 months. This auto-immune disease is incredibly annoying to say the least. I have eczema all over my legs, hair sheds like a dog, I'm sad a lot, have been gaining weight on a strict diet for 10 months, and the list goes on. BUT I do feel like I made the right decision with RAI because you simply CANNOT live with your heart pounding and the fainting spells (which I had as well). Blessings to you.
  • michele_n77
    michele_n77 Posts: 10 Member
    I was diagnosed with Graves in 2010. I had most of the similar symptoms listed above to include racing heart/palpitations, sweating, shaking hands, mood swings, etc. and in my case I started to lose a lot of weight which I thought was due to a good diet and exercise;) I found out that I had the disease when I started to experience major hive outbreaks...all of this gong on while my husband was deployed and I had a one year old at home! I saw many a doctor before I was diagnosed. One individual even insinuated that all of this was in my head and due to stress. I ended up being put on a high dose of Methimazole and steroids to control the severe outbreaks. I eventually gained back all of the weight that I lost plus quite a bit more. It's been quite the struggle to find balance. I recently had blood work done again and my levels are now "normal" and have been for quite some time, but I don't feel "normal". I do have a referral to see another endo as I have nodules on my thyroid that have to be monitored. Part of me would like the surgery to see if that will help eradicate the symptoms all together.....on the other hand I'm curious if drastically changing my diet would help...I've read that eliminating gluten/dairy, etc. and anything anti-inflammatory can be life changing. I try to keep a clean diet most of the time and we don't eat much in the way of processed foods at all at home.....
  • KathleenCora
    KathleenCora Posts: 160 Member
    I just had blood work done and was diagnosed with hyperthyroidism. I still need to see the specialist. I have many of the symptoms but I just lived with them for so many years I didn't really think anything of them. I sweat buckets, heart palpitations, so tired, anxious, seriously irritated, depressed, hot and cold,.... here I just thought I was depressed.
  • editorgrrl
    editorgrrl Posts: 7,060 Member
    I just had blood work done and was diagnosed with hyperthyroidism. I still need to see the specialist. I have many of the symptoms but I just lived with them for so many years I didn't really think anything of them. I sweat buckets, heart palpitations, so tired, anxious, seriously irritated, depressed, hot and cold,.... here I just thought I was depressed.

    Me, too! I was misdiagnosed for years as bipolar.
  • KathleenCora
    KathleenCora Posts: 160 Member
    editorgrrl wrote: »
    I just had blood work done and was diagnosed with hyperthyroidism. I still need to see the specialist. I have many of the symptoms but I just lived with them for so many years I didn't really think anything of them. I sweat buckets, heart palpitations, so tired, anxious, seriously irritated, depressed, hot and cold,.... here I just thought I was depressed.

    Me, too! I was misdiagnosed for years as bipolar.


    Gosh that sucks, pretty much the same. I was just told I suffered from anxiety and depression with a touch of ocd thrown in there. Now they are telling me the majority of my symptoms are due to hyperthyroidism and my slight ocd is due to having to deal with these symptoms with no help for what I'd say close to 6-7yrs. My mind trying to compensate for my body not being in balance. Ugh!!
  • editorgrrl
    editorgrrl Posts: 7,060 Member
    Yeah, so many coping mechanisms to try and function with sweating, palpitations, brain fog, insomnia, fatigue…
  • Katsville
    Katsville Posts: 28 Member
    I was diagnosed with Graves last year. Had many symptoms for years - sweats, hot, irritable. Then some more appeared last year - interrupted sleep, constant need to go to the bathroom, inability to keep cool, falling asleep while driving for split seconds and finally heart palpitations all night long so even less or no sleep. At that point I gave in and went to a GP. I am now on propranolol and carbimazole. Beta blockers seem to be working and my heart is so much better, can't hear it at all now.
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